19th August 2011

Yesterday we met at the riverside to say our farewell to Swordfish.

The sun shone beautifully.

I found a poem which I felt defined many a thought and feeling.

'You can shed tears that he is gone
or you can smile because he has lived.

You can close your eyes and pray that he will come back
or you can open your eyes and see all he has left.

Your heart can be empty because you cannot see him
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember him and only that he has gone
or you can cherish his memory and let it live on.

You can cry and close your mind, be empty and turn your back
or you can do what he would want: smile, open your eyes, love and go on.'


The children and I sat by the water's edge and scattered his ashes into the water and our small gathering of family and friends put beautiful red roses into the river.

There were tears, a few jolly memories but above all much love for someone so special.

The river holds many memories and now it will grow bigger and more proud as it carries Swordfish away onto his next journey.

Scattering Ashes

I wrote an entry regarding a trip to Wales to scatter ashes. I must let you know that this has now changed.

After long deliberation, I have decided against a trip back to Wales for many personal reasons which I won't go into. Needless to say the decision has been very difficult as Swordfish had not made clear his wish for his ashes to be scattered in one particular place.

We have decided to visit the river Thames for a private, family occasion on 19th August which would have been Swordfish's 46th birthday. I don't think any one of us wants to do this and the children are struggling with the thought of letting go. Boogle Bunny especially. There will be no right way to perform the scattering, no right words to say. Just a group of people sharing their love and their loss of such a wonderful man.

I would like to thank you all for your wonderful messages of support and love. Knowing that we are thought of and watched over by so many is a great comfort.

So if you have a moment to stop, a thought or words to say, please do so on Friday 19th August and tell the people closest to you that you love them.

Time is precious.

this is us

It has been a little over 5 months since Swordfish passed away. Our home is a very empty place without his huge personality but it is also filled with the memories of a wonderful husband and father.

The children and I still take every day as it comes. We expect nothing and if all we achieve is a knowing look or a smile then we have gained.

I often drift back to the blog and read entries from various stages and tonight I was drawn to the last three before he died. I don't know how we had the strength to continue as we did as a family but somehow, we managed. And so on days like today, when I want to curl up and forget about everyone, I must take courage from my own words and remind myself that we can get through each day. No matter how hard or bewildering it may be.

Boogle Bunny turned 10 years old a few weeks ago and she has grown in strength and determination so much. There have been a few rocky times and very confused times but to her credit she has continued to develope into a wonderful, caring, funny and sensible young girl. I should really add occasionally stroppy but I won't!

Hufty was 7 back in May and through the last few months has shown very little change in his cheery personality and dispotition. He has always been sensitive in nature and this side has been slightly more noticable. He had a sad week recently but those times will come and they they will pass. Until the next time.

Their daddy would be immensly proud of both children.

We have moments when we cry together and moments alone. We laugh, perhaps not as much as we used to but there are many fabulous memories of Swordfish that we are able to share together.

Friends have as always been amazing and I am so very grateful to so many.

We mananged a holiday in May which was a much needed distraction and rest. We - just the 3 of us - went to our favourite island Ibiza. A few people questioned my choice, concerned that memories would be too painful. It was completely the opposite. I took great comfort from going somewhere special, that I knew very well and I was able to show the children many places and share stories of our time together both as a family and before, as a couple. Naturally, there were a couple of tearful moments but I think they would have occured anywhere.

I am yet to have any length of time on my own, away from the Boogle and the Hufty. I do feel like it's time that I did. I don't really know how I will feel. They are my reason to get up every day. But I must find some space for myself which I am not so good at doing. I am very scared that I will get everything wrong. What if I let my children down? It is a huge responsibility being a parent and being a parent alone, in grief, is particulrly tough.

I just want to make Swordfish proud.
I want to remember what it feels like to be happy for more than a brief moment.

Thank You

I just wanted to say thank ou to everyone who has sent their well wishes, kind words and thoughts. The children and I take each day as it comes. Some are good and some not so great. As a family we all grieve differently, sometimes together and sometimes on our own. Children grieve so very differently to adults and our two show their sorrow in their own individual way. We talk and share our thoughts all the time. We share our tears and laughter. Swordfish was an amazing person with a huge peronality and we are able to share so many stories and memories; these help with those sad moments. I recently had my birthday and that had moments of incredible sorrow but we managed to have a super day out together. So many friends have donated to the hospice that took great care of Swordfish - thank you so very much. The doctors and nurses there are very special people. I have been asked to give the Just Giving link; a friend of our is cycling from London to Paris and asked if he could ride in memory of Swordfish and donate the sponsorship to the hospice. The link www.justgiving.com/justin-dennis39 Think good thoughts every day dear friends xx

Cader Idris - An Invitation

I wonder if you would take a moment to read the entry

'at the peak - time to descent' dated Sat 8th May 2010

Cader Idris was a very special place to Swordfish and in this posting he mentioned a desire to return to Cader Idris when 'the dragon was slain'.

I would like to continue this wish - even though it will be under different circumstances.

I feel this would be the perfect resting place for Swordfish - a home coming unlike any other.

His wish was for anyone to join him on the journey and to share a pint. I too would like to extend this wish to you all.

Swordfish celebrated his birthday on August 19th. I am hoping to make the journey to scatter his ashes around this date. I will post final details at a later date.

You are all most welcome.

The dragon was mightier than the sword but the passion and the spirit will shine forever.

The Day That Was

Monday 7th March 2011

A very dear friend left a message on facebook saying

'We all came to see you today old friend,you must have been blown away! For we gathered in our hundreds, on this saddest of days, to pay our immense respect,to say our goodbye and although you have gone old friend,the memories will never die. xxx'

I could not have said it any better myself.

There were beautiful words spoken with dignity by family and friends, poetry written by Swordfish many years ago, read out by those very close - even Boogle Bunny managed to read in front of so many. Hufty's loving words were read by Teach.

Thank you all.

I keep trying to write words to express my feelings but I am not able to put them into any form.

All I can say is that the love was there for all to see and the sun shone beautifully all day.

I will miss you forever my darling husband and best friend. xxx

Share the moment.....

Firstly, may I say a very big thank you to everyone who has left thoughts and comments. Our families have been deeply touched and comforted by them all. I keep reading them regularly - thank you.

This week has been a blurr of activities based around arrangements of the funeral. It has been arranged for Monday 7th March at 12.30pm.

Swordfish wasn't particularly religious but he was highly spiritual and I hope I have created a ceremony that is fitting.

I would like to ask you all to share the occasion by taking a moment on Monday to stop and think a while about someone past or present who has touched your lives as Swordfish did to me.

There will be a lot of love floating around that day xxx

Wednesday 23rd February 2011

It is with deepest sorrow that I write to say that my darling Swordfish passed away this morning.

It was peaceful and I was with him all night.

I will write on the blog again in a few days time.

I don't know what else to say right now.

xxx Kitten

the next stage

Over the last few days there have been many ups and downs.

Swordfish has had moments of appearing bright and relaxed and moments of feeling very troubled. There have been tender moments and typical Swordfish moments of calling out the best travel route back to the office to his collegues who dropped by.

However, the overall picture is one of rapid deterioration. Last week he spoke of feeling comfortable both physically and emotionally, content in his environment. Today was very different. He managed to convey with difficulty how frustrated he is with the confusion he has, how uncomfortable he feels emotionally and he spoke of intense physical pain throughout his body.

Pain is something he has never suffered with to the degree he mentioned today. Even up to yesterday he managed to tell me there was little pain.

This pain may be physical but it appears far deeper than that; an emotional pain that no one should feel nor witness.

Following his fall he has had problems getting in and out of bed and this morning he said he didn't think he could do that anymore.

A lengthy discussion with the wonderful doctors led to a joint decision by them, myself and his parents that sedation would be the gentle way to control his symptoms and relieve his discomfort and anxiety. He sleeps most of his time, waking sometimes with a smile that will warm anyones heart. But there is so much we don't see.

I want him to feel relaxed, at ease if that is at all possible.

And so he gently sleeps, aware we are with him, holding hands and talking softly.

I will update again xx

a short message

Swordfish has asked me to write a short blog entry. These are his words.

I am sorry for the lack of entries to the blog recently.

I am very weak now and my capacity to concentrate is very limited. This is down to both the drugs and the progression of the disease.

Kitten and I will endeavour to write a blog together in the next couple of days.

update from kitten

Swordfish has been at the hospice since Tuesday.

The care he is receiving is superb. The staff are understanding, compassionate and flexible without being overbearing or authoritative.

They listen so well and have as much time for you as you need. They support all of us equally and I am humbled.

The main objective was to help Swordfish become more comfortable with the medication he is taking. Each medicine has an effect and a side effect; so, often a further medicine is required!
The syringe driven meds seem to be helping with the sickness but he is so much weaker than last week.

Some of the meds are making him very drowsy during they day. His parents and I have sat with him for many hours over the past few days and he has slept gently for much of this time. Having said that, some of the time he has been more than capable of managing his conversations with the doctors and deciding on treatments.

As the liver is diseased and where it is situated below the diaphragm, Swordfish has been subjected to long bouts of hard hiccups. Two nights ago the lasted over 4 hours. They are very painful and constant. And probably very tiring too.

Unfortunately, just to add to the discomfort, Swordfish took a fall in the early hours one morning. He simply lost his footing and fell onto his right side. The ribs and probably the liver have taken a fair knock and so now, of course, there is medication for the pain. Anyone who has ever had a bump to the ribs will appreciate the discomfort.

His food intake is very little although at times he says he has an appetite but what ever he eats doesn't satisfy. The staff made a strawberry milkshake with Nesquick and ice cream this evening which went down very nicely though.

I left him dozing in the knowledge that he is in good hands, well loved and Wales beat Scotland in the rugby. We had the match on in his room and he did manage a glimpse or two as the Welsh scored.

I will continue to keep you all informed and I apologise if I ramble.

In the Hospice

I've been in the hospice for a day and am getting used to it.

I've been having plenty of visitors, especially as my parents arrived from Wales yesterday.  Tricky Crow, Dumbledore, Gandalf and Bee were also weekend visitors as well as the omnipresent Notoplip.

The main  purpose of being here is to make me more comfortable with the combination of medicines that are being administered and for that purpose they will be keeping me in for anything up to a week.  This is mainly to work on sickness medicine and night time medicine.

It will be interesting to see the results.

The staff are fantastic and I have also been joined today by my GP.

Latest News

Swordfish was admitted into the hospice late this morning. He has a large room and bathroom and windows that overlook the gardens. There is even a small patio outside his door if he wanted to sit and take in the beautiful springlike weather.

Oddly there is also a small bbq!?!

The objective is to get Swordfish into a more comfortable state and one thing suggested a while ago was a syringe driver. A canula is placed sub - cutaneous and will supply a regular amount of medicines directly into his system. This is already in place and hopefully he will benefit soon.

It's very strange not having him here. I miss him terribly but I know he is in the right place at the moment. It's open visiting and the staff are very welcoming and so very helpful.

Into the Hospice

I will be admitted to the hospice either tomorrow, or in the next few days, to work on making me as comfortable as possible through drug control.

I am taking an array of drugs but am still having too much sickness and other discomfort.

Being on-site they will be able to monitor me closely and will be especially focused on the anti-sickness.

I am likely to be away for a few days, which will be the first time of any length.

An Air of Calm

The transfusions seem to have given me a little boost.

I have spent the day in bed but my head feels clear and I feel calm.  My appetite is virtually at zero and this is disease related.  Through this though there is an air of acceptance and I feel fairly peaceful.

There is a lot of opinion in the comments of posts about healers, but this subject is not so important in the sense that a healer cannot change my physical condition at this stage.  The point about the healer was to help bring me peace.  The particular man that I had arranged to see is highly sought after and will be calling me next week, something that is unprecedented for him.

What is important is that I am beginning to look forward and am becoming less anxious.  I have been through a period where I have gone quite quickly from being still seemingly healthy to very poorly and the rate of change has been difficult to deal with.  It is important for me to get on top of that and just accept things as they are.

Transfusion Helps a Little

I do feel a little boosted after the transfusion though it is early days yet.

As Kitten says it was a bit of a nightmare waiting at the hospital yesterday but we got through it.

Hopefully I willl feel boosted enough to have the energy to watch the rugby tonight.

Kitten's parents have gone home today (having been here since Tuesday).  They were here to cover for our proposed journey to the healer in Suffolk, which was regrettably cancelled.  Many thanks to them for their help.

Blood Transfusion

Yesterday's blood transfusion went ahead as planned, although it was a lengthy process.

I took Swordfish to the Marsden by 9am but the transfusion didn't begin until almost 2pm. The staff seemed very busy and the nurse appointed to Swordfish appeared a lot less enthusiastic about her work than any of the other members of staff I have met.

Still, we held it together and a weary man returned home by 8.45pm.

Today he is very tired and so Nurse Kitten (self appointed title!) has suggested plenty of rest and day time snoozing whilst the children are at school.

Thanks to all for continued good wishes. Every word and thought is well received and very much appreciated.

Love kitten x

Shifting Sands and Healers

The news today is that I have had blood test results that show that I am anaemic again and I will be going into the hospital to be have a transfusion tomorrow.

Also, my white blood cell count is up, showing that there is likely to be an infection brewing so I have been put onto antibiotics.

I note that there has been some discussions about methods of healing and healers ability to travel.  The travel issue is really down to well established healers having books of business.  They have other clients who they cannot let down by allocating a large block of time to an individual.  Indeed I had to book a month ahead for my own appointment.

There are varying media for healing including "distant healing" for which I could be accommodated but it is not the same as face to face.  My wife actually suggested the telephone and his P.A. said that he had not ever done it.  Surprisingly though he has said that he will.   Whether or not I will be able to take the call or not depends on when it comes as I will now be in hospital tomorrow.

Suffolk Cancelled

It is with some regret that I have cancelled my trip to Suffolk.

There has been a deterioration in my physical health over the last couple of days that will make the journey very difficult.

It is a bit of a hammer blow because I wanted the sessions to boost me, however, weighing up the journey, the different location, organisation of food and so on I find it difficult to imagine that it will do anything other than drain me.

Kitten's parents are here as they were to look after the children.  They will be here but staying with our good friends and neighbours "The Chelsea's"

Mental and Emotional

This is by far and away the hardest part of the journey.  Why?

1. I know that I have secondary cancer and have a limited lifespan
2. I am very weak
3. My appetite is reduced because of the cancer
4. If I try and eat extra I am sick
5. I do not have enough energy to do simple things like playing with the kids or, indeed, anything projective

It becomes very hard to be positive under these circumstances no matter how bullish your nature.

Despite the best thoughts of everybody it is difficult to understand the gravity of my situation now and, until you look at the above list, the lack of positive direction.  Although I am comfortable at the moment it is the lack of energy which is the greatest restrictor.  I had hoped that when I had recovered from the misplaced stent business that I would regain my strength but that has not happened and reflects the development of the cancer.

What I have now is an unpleasant status quo.  I am functioning on a day to day basis whilst my ability to function is diminishing.

Back From Wales

We left late this morning to pick the best time to avoid the traffic and make the journey relatively straightforward.

It was great to see the family, especially my dad after a prolonged absence.

Getting myself out of my house was a therapeutic exercise in itself though not the most comfortable.

Putting things in perspective, I can get myself from A to B with Kitten driving but overall my energy levels are very low.  This is because of low food intake, which is due to the cancer itself.   The cancer is reducing my appetite.   I discussed this with the MacMillan nurse on Friday.   The bottom line is that in the absence of any  scans now we do not know whether the cancer is just restricted to the oesophagus and liver.  As it progresses through my other organs it will continue to suppress my appetite and reduce my energy.

Nevertheless, the journey to Wales was uplifting and now I must see if I am able for the journey to Suffolk later this week.

In Wales

Well, we made it down with a trouble free journey.

Naturally, you don't get away scott free when you come away from your usual routine and I have paid with a lot of sickness last night and this morning.   However, I am in reasonable shape today and am able to see some visitors.  The the usual family are all coming.

It is especially good to see my father as both of us has been ill and not seen each other since the end of November.

As a welsh man there is something good just in crossing the Severn Bridge and feeling at home.  London is where my home is but Wales is where the roots and heart are.

Kitten and I will stay until tomorrow morning and return whilst the roads are still clear.

All in all it will be a good road test for our trip to Suffolk next week.

Clearing My Desk At Work

Yesterday, I went into work to  clear my desk and say my goodbyes.

It is nearly 24 years that I have been at work so it is easy to imagine that it involves a degree of emotion.

The journey up was simple enough but the goodbyes were tougher.  It wasn't the sort of "leaving do" that one would expect from me (i.e. drunk and debauched) and there was lots of hugging.

As with any work there are people that you are closer too than others but I know everyone.  There was everything from handshakes to hugging in the knowledge that, other than the few, I will not be seeing these people again.  No going back to meet up in the pub or other social occasions, this is it.

Of course there are those who will still come and visit me, but you  see the overall picture.

My mistake though was not emotional but physical.  I ate shortly before leaving the office and that was not wise.  It started a chain of illness throughout the afternoon and left me in a poor state before bedtime.  This wasn't good preparation before a planned journey to Wales, so we are now left in a situation of seeing how it goes for today's plans.

Visit To Wales

Given my recent state of health the visit to Wales is a big ticket item and it is there to serve the purpose of seeing my dad whom I have not seen since his stroke.

Of course,  if I am well enough to take on board visitors it will be a pleasure to see everyone, but I will not know what state I will be in until I have settled in.

The whole trip could prove to be a disaster or an uplifting success.   We will have to wait and see.  What I do know though is that it will have to be conducted in a much more lower key manner than recent visits.

A Visit From The Thatcher's

Our friends from Winchester popped in this morning and it was good to see them.  Mr "Thatcher" works in the City, so he was able to continue onward from ours on his journey.

It has been good to enjoy a variety of different visitors over the last period and that reflects the fact that I am not too strained physically.

Huffty has had a session with the child psychologist today and I have had a visit from the district nurse.

Tomorrow, I am intending to go into town to clear out my desk at work and Kitten will be driving me up for the occasion.  It will also offer the chance to say goodbye to those colleagues whom I am unlikely to see over the longer duration.

The weekend is the big occasion as we are hoping to fit in a visit to Wales to see my father.  This will be a precursor to making a trip to Suffolk to see the healer next week and will provide a solid benchmark.

Improvements

After some sickness last night I am perhaps not feeling at my best today.  Even so I have taken a short journey out with Kitten in an effort to "keep myself moving".

There is a stability about my position at the moment which is far more comforting than events at the beginning of the month.  Even though I have complained of boredom as the enemy it is a far better enemy to have than the hunger and weakness and pain of hospitalisation with the displaced stent and subsequent recovery.

Although I do not have the greatest of physical platforms to grow off there is at least a mental one that can be  improved.  Having been put through the mill over the last few weeks there is room for more positivity about what I currently do have rather than what I don't have.

Money Can't Buy You Health

The weekend was tough but, as mentioned, it was good to see familiar faces.

Today is a little easier but it is still very hard for me to get my head around how much my energy levels have plummeted in such a short space of time.  Before radiotherapy you wouldn't even have know that I had cancer whereas now it is hard for me to put one foot in front of the other.

The arrival of a large sum of money in my bank account hasn't even put a smile on my face because I am not physically positioned to take advantage of it.

Even the blog has become very matter of fact.  There is plenty of potential material but I simply don't have the energy or mood to scribe it.

I will keep on moving forward and looking forward to moments of pleasure.

Plenty of things Happening, But

I have been involved this weekend with an hour down the football club yesterday with Notoplip, Billy the Fish and D.A. Decorator.   Today, Magic Coat, Young Aunty and the Serious Barman visited from Wales and we took a walk.  There was also a visit from Lance Corporal and Big Boss.

However, I have not felt well throughout this, hence the brevity of this message.

It was good to see all parties though anyway.

Pushing Out - Phase II

When I came out of hospital it took huge resource to get myself up to a point where I was consuming enough calories to function.

Having reached that point there is only so much pleasure that that can be derived from being well enough to sit on a sofa and watch repeats of Top Gear.

The next step has to be to push some more so that I can participate in activities.  This means more calories and it is difficult to know how they can be consumed and kept in place, but try I must.

A while back I took some steps to release money from a pension pot into our every day finances.  This is something that can be done in my circumstances.  The idea was to be able to have the means to enjoy the time that we have as a family but it is only of relevance if my physical shape is good enough to do it.

That money arrives on Monday and I am not in shape but at least I have the focus.  That is a good start.

Steady as She Goes

It has been a fairly quiet day with the biggest influence being the changing of my night time medicine.  I have been feeling quiet drowsy in the day today and this is something that I am in conversation about.

Otherwise, there was an opportunity to catch up with a good old mate "Ibanez Man" and we passed an amiable couple of hourse together.   Now that I am feeling slightly better it is good to have visits so long as they are not too extended.  I am in that in between stage where I am not strong enough to be active and outward but where the house is becoming a very boring place to be.

The car has been in the garage for a couple of weeks and it finally arrived back due to help from many pairs of hands with Notoplip at the centre.  Thanks to everyone for sorting it out.

Recap

Over the past period there have been two different strands of key information.

The first has been about my on-going recovery from hospitalisation and the second has been about the general progression of the disease.

It has to be said that the former has been slow but it has provided some obvious returns.   The overall benefit though has been clouded by the latter.

I am not one to just roll over because medics tell me  that the overall picture is grim but I do know what I see, feel and experience.  The last few weeks have have been very tough and very draining and commensurate with what I have been told.   There is a tangible slippage in treatment from the view of the Marsden and that is that I am not eligible for any of the chemotherapy trials that have previously been talked about, simply because I am not strong enough to deal with them.  This effectively reduces the Marsdens's role in my care and sits it more firmly with the MacMillan nurses and my GP, though the Marsden is still only a phone call away.

It is important to reiterate what a nasty cancer that cancer of the oesophagus is.  Fighting one cancer isn't the same task as fighting another and all I can do is do my best with what is put in front of me.

When I talk with the medics they do not "throw" bad information at me.  I ask the questions and it is clear that there is no chance of recuperation from the disease bar divine intervention.  Everything points to say that the disease is rampant and out of control.

This explains my attitude of just wanting to get the best out of the days that I can with the limited energy resources that I have.

Another Decent Day

I had another decent day today.  Not bounding full of energy but reasonably stable.

Hoo Haa popped down from work to see me and to assist with some paper work.  We haven't seen each other outside of work for a while.  We had hoped to get together for the England vs Wales rugby match but that seems somewhat tenuous at the moment.

It was also good to see Notoplip, who popped around at the same time.

Meanwhile, Cymraes returned to Wales after her two day stay, there was a visit to the doctors rounding off two days of various discussions with various medical personnel.

There has been a lot for Kitten and I to absorb and that process continues.  We also chatted with the Huffty this evening who is "feeling it" and seems in tune with the severity of the situation.

Cancer Steals a March

There were many things to take out of the meetings today but there was a solitary overriding topic and that was one of how the cancer is advancing.

I had not discussed technical data recently and the tumour marker, whilst a blunt instrument in itself displays a trend.   That trend is not good and suggests that the cancer is advancing at a ferocious pace.

Just before I was due for operation the particular marker that I am referring to had been reduced from a starting  point of 70,000 to 12,000.  Most recently it stood at a 1,000,0000 but they expect today's blood tests to register close to 1,500,000 when received tomorrow.

What does that mean?   Well it means that my age and innate body strength is masking the severity of the cancer so much so that it is not obviously apparent that I may only have weeks to live.

Since diagnosis as metastatic at the end of November with the cancer progressing into the liver we have gone from looking at "long months" to "long months being ambitious" to "weeks".   It is harsh but that is the medical position.

It is somewhat ironic that today is my best day for a while in terms of stability.  I am very very weak though.

It is time for Kitten and I to get the best out of every moment that we can.

A Little Stability - Some Positives

There are definitely some positives to be drawn at the moment.

My energy levels, although not booming, are well off the floor levels that they have been at for the last few weeks.  I am stronger in the mornings than in the afternoon as I tend to fade.  These these things can be difficult to measure as things are much more gentle in the morning at home i.e. the children are here in the afternoon!  As much as I would like to be, I am still not capable of coping with the complete presence of a 9 and 6 year old.

The stent seems to have settled as much as it is going to and eating is comfortable.  I am having to eat small meals (around 250 calories) as that seems to be about the limit of what my liver can process without me being sick.   Most mealtimes are difficult as I can sometimes still get hot and dizzy and have to make the effort to make sure that the feeling does not escalate.

The sickness bouts I have are more minimal and are more to do with the mechanics of the situation.  These I can cope with.

My weight has also stabilised again and a few pounds have bounced back on though it must be said that I am painfully thin and without any real prospect of regaining even the recently lost weight.   My current intake simply doesn't allow for significant weight gain.

So what are my aims.  My aims are simple.  First I want to keep on improving my eating and general well-being.  That way I can look hopefully of more than a walk to the paper shop or around the garden centre.  Second is to reduce my reliance on the oral morphine.   Whilst I have been ill I have have been using it more as a sleeping aid than a night time pain killer and the doses I am taking are probably excessive.   The drowsiness it causes run over into the following day, so I need to iron out this whole area.

The last thing is to hope that there are not any other major other blips around the corner.  Part of my conversations at the Marsden and at the Hospice today will be focused on how to deal with any problems quicker and better should they arise.  An example would be the suggestion of using a feeding "peg" to get direct feed to the stomach as a quick turn around.   This rather than experiencing the exhaustion that I did when building myself back up over a one and a half week turn around process. 

Familiar Pattern

The first thing to say is that the pain is pretty much gone, so that is a big bonus.

I had a bright start today and things only seem to get cloudy with the second meal of the day.  In fact, anything that raises my temperature can put a fly in the ointment so even the morning shower caused a real bout of tiredness and need for rest.   With my second meal though I had to take myself off to bed for a little rest having greeted my mother some half an hour earlier.

My mother is on her way now to pick up the kids with Kitten and I am slowly coming back into the land of the living.

The point of all this is that although I am in a better state it is still extremely precarious.  Having worked very hard to get myself into a decent place it is all about making that place as robust as possible (if possible).

Yesterday was a Difficult Day

I woke up yesterday with a strong pain in the middle of my chest.  The normal background painkiller had little effect.

I struggled with it for the morning and even joined Kitten in picking up the children from their sleepovers.   In fact, if it had not been for the pain, I would have been feeling in reasonable shape.  However, I succumbed to it after lunch and retired to bed.   I self-administered oral morphine to try and disperse the pain, or at least relax me.  This may not seem like the wisest choice but I was faced with something new just before having two scheduled meetings (on Tuesday) to discuss my condition.

I have an appointment at the Marsden on Tuesday at midday and one at the hospice at 2.30pm.

The oral morphine has not completely alleviated it but it has dispersed it in part and made it more tolerable.  It has, however, left me with an overall drowsiness but it is better that than the strong pain that I was experiencing.

The pain could have been caused by anything but I will discuss it and see how best to deal with it come Tuesday afternoon.

Things Seem Calm

I had a good night's sleep and my general levels of well-being seem to be continuing upward.

Kitten and I managed a short-walk yesterday afternoon.  Of course that is a drain on energy levels but it also continues to move me away from the recent hospitalisation and feelings of illness.  So, on a day to day basis, things remain positively focused.

The kids are on sleepovers today.  Huffty has already gone because he is at football and will remain with Notoplip and family until tomorrow.  Boogle begins her sleepover after lunch.  The quiet will allow me more time to keep up the recovery and also quiet time with Kitten for us to enjoy.

Everything is frustratingly slow but, given the overall picture, it is still refreshing that I am making day to day progress and can extract some level of enjoyment from the time.

My mother, Cymraes, is coming up to visit on Monday and Tuesday.  She felt moved to do so afer the latest comments about the overall condition from the Marsden.  It will, of course, be a pleasure to see her again.  My father will be looked after and he is continuing to make progress from his stroke, albeit slow progress.

The Stent

I have written this piece as a response to a question from Sue.

The stent that I have had fitted is bigger than the last one.  I remember that the last one took about a week to two to settle down properly.

Whilst they are settling they can be uncomfortable whether swallowing food or just normal swallowing.  There is also discomfort and sometimes pain in the chest, especially when hiccuping (this happens because of the stent sometimes).

So I am experiencing discomfort but the benefits outweigh it and the discomfort seems to be easing gradually.   I am hoping that it will be negligible after a couple of weeks i.e. another week's time.

Despite My Best Efforts

I have just finished a conversation with one of the top people at the Marsden and it seems that the problems that I am having are consistent with rapid disease progression.

So, over the last period not only have I been trying to recover from hospitalisation but also with the cancer advancing.

After taking a walk this morning for a trim at the hairdressers I returned in one piece and felt reasonably OK.  Then Kitten returned and we had something to eat and once again I became hot and dizzy and had to rest.

The fact is that the cancer is not given me the respite that I wished for, instead it is taking every opportunity to grasp hold of me harder and it seems that there is little that I can do.  It does seem that my body is determined to go downhill faster than Ski on Sunday.   I just don't understand why after being strong for such a long period of time.  It is a year since diagnosis on 9th February and I guess that it is the last couple of months that the decline has taken place i.e. since the disease has become metastatic.

The Marsden have suggested that they cannot offer trial treatment because I am not consistently well enough.  The pathway from here seems to be to get the Macmillan nurses to get me to a position where I am as comfortable as possible.

It isn't the news that I want to hear, but if it is the truth then it must be heard.

Despite a Bad Start

Despite a bad start to the day with sickness issues I am still stronger again today.

Because there are many issues at hand it is far too early and I am far to weak to say that I am in clearer waters.

I feel strong enough to get up and write properly (rather than just a one liner) and I am considering a walk up to the shops to see the Italian Hairdresser to get my hair cut.  Apparently he has trialled a new "Brazilian" treatment on his own hair, which removes the frizz from your head hear.  That will make him look even more like Tony Curtis than ever.

It will still be a day of doing very little and it is very noticeable that I generally run into trouble after 4:30pm.  Yesterday it was with more sickness.

My weight is continuing to drop, which is very disconcerting because I am making my best efforts to feed myself.  I was hoping that it would at least have stabilised itself.

There is no escaping the fact that the last two weeks have been utter misery.  It is so difficult to lift yourself out of the trauma when it is an untrodden pathway.  You don't know what the rules are and there are lots of unknowns to battle along the way.

I am hoping and praying that I am close to some kind of respite.  Despite that I am not naive enough to be expecting it.

Best foot forwards is the only way from here.

Managed a Short Walk and Picked up Kids

I managed a short walk to the shops at the top of the road with Kitten at lunchtime, which is a big step forward.

It was painstakingly slow but was worth its value in symbolic terms more than anything else.  Just to be able to have the strength to get out of the house and out of the environment of complete rest is a break in the right direction.

Since originally posting this article I have also managed the two mile ride in the car (with Kitten driving)  to pick up the kids from school.  I did it to try and get on their wavelength before they come into the house.

I now need to keep the food up to keep the improvement going.  I am still very frail and fragile.

Mixed Results, but Strength Up

I am having mixed results on the diet front but today my overall strength is up once more.

One of the things that I have found out from the hospital is that I had a bigger stent fitted.  It is hoped that it will be able to help me eat better but I assume it is also so that it doesn't slip again.

I am experiencing very slow progress overall, but at least it seems to be going in the right direction.

There's not much more to say at the moment because I am just fighting the battle and not doing much else!

Trying to Push

Like any malaise, sometimes you have to try and push your way out of it.

Of course there is no point in trying when you are too weak. 

My strength has come up a little over the last couple of days and, although I did not have a great start this morning, I am recognising that I have to be bold today.

It was mash at lunchtime and now I am revisiting the Skandishake supplement drink in any attempt to push the calories and strength forward.

I am like anyone else in that I can accept that I am ill and have recently had additional problems, but now I am impatient to get back to a level of functioning that makes life bearable.

I am hoping that my efforts will pay dividends.

Supplementary Drinks

There has been a lot of discussion about supplementary drinks in the comments of the blog, so I thought that I would relay my experience.

I tried the Fortisip supplements some time ago and they didn't agree with me.   I didn't help that I had them at the beginning of the radiotherapy process so, not only did they taste really bad but they also started to burn once radiotherapy took hold.

By far the best for me have been the Skandishake drinks and I literally "survived" on these for a good month and a half during and after radiotherapy.  When the cancer went to the liver though the body started to reject them immediately and severely.  I am considering giving them another go now but in smaller measures.

I also have another that I was given this time in hospital called "Calogen".  I believe that this is also Fortisip.   When I left hospital the body also rejected that one, but I am going to give it another go as I get stronger.

With the secondary cancer my body cannot digest some of the things it was doing so easily before.  An example is full fat rice pudding, which I tried unsuccessfully the other day.

I am constantly trying to find new things but am attuned to the reaction of my body and must listen to that first.  It is important to try and keep the food down as otherwise the sickness becomes a destructive cycle that takes good food with it too.

Today, mash is on the agenda.  It will be fortified with lots of butter for those extra calories - yum!

A Little Mystery Explained

When I went into hospital with swallowing problems it was because of problems that I was experiencing high up in the oesophagus.

Anyone reading the blog may be forgiven for wondering why the displaced stent caused this because the stent is positioned low down at the main site of the tumour.

I spoke with the consultant on my way into theatre and he explained that the feeling could still be high up even if the problem lay with the stent.

I thought I would mention that as a matter of record (for myself, even if no-one else is interested)!

On the Up?!

I am sure that today will be full of the usual difficulties and many highs and lows.  However, it has to be said that this is definitely the best that I have started the day for two weeks or so and I am grateful for that alone.

The trend is up and I can live with that.  I am hoping that I will get to a point where there is "traction" and I just get better "all of a sudden".  That would be great as I can then just get on with enjoying the simple things and using it as a platform to build from.

I have started by adding some Weetabix to the diet, so I will have to see how that goes.  Anything with carbohydrates is good for the calories and smooth yoghurts have been my saviour over the last couple of days.

Good News for Lady Dai and Mrs Stockholm

News of another baby in the family.

Lady Dai and Mrs Stockholm are expecting at the end of June.  Despite their monikers, yes, one of them is male!

This is a quite late one though not overly so by today's standards and only a few years later starting than Kitten and myself.

Good luck to both of them.  Also, my apologies to Mrs Stockholm for not being able to take her call last night but I was having a rough patch!

A Mixed Bag Day So Far

Today has been a bit of a mixed bag.

I say that because I started off feeling strong but have ended up a little under the weather.

Last night I got a little mash done for the first time since having the stent fitted, so today I thought that I would try some rice pudding.  I managed to eat it without a problem but I think that it is just too fatty for my body to process now.

The after effect is to make me weak, but I am now back on the soup and trying to build up again.

This little journey is by no means a straight line and is one of perseverance, but I have spoken to different people today who seem to think that I am heading in the right direction.  The sickness is still a concern and should be reviewed if it persists over the next few days.

A Slight Easing

Things feel a little easier today.

I am certainly not out of the woods yet and am still locked in a cycle of "force feeding" myself.  However, there is a little more residual strength, which is perhaps measured by an ability to focus more and join in a little more.

The days are very boring at the moment as it really is a case of getting from one end to another and getting in and keeping in as many calories as possible.

Kitten is there with her guiding hand, both approving and chastising as well as ever suggesting.  To be honest I would be lost without it.

On another positive note, it is great to be able to look outside the house and see sunshine.  That's a commodity that has been missing for a lengthy spell.

Boogle has been on a sleep over at SandD's last night with their children and Huffty is off to the football this afternoon with Notoplip.

Weight Loss

Each time that I have a little "bout" I tend to lose about 4lbs.  With the events of the last week and a half that is closer to 10lbs, which is both significant and worrying.

I am focused on getting the diet up because that sort of event cannot be sustained.  I am now two and a half stone lighter than before I started radiotherapy in August, so it has to be where my focus is if my health stands a chance of stabilising.

Very Grateful For the Result

If you read my posts of the last few days it may seem that I am not grateful for the huge result I have had.

The fact that the problems were caused by a displaced stent has to be seen as the most positive outcome.

When you are living these days though it is hard to acknowledge anything.  My posts have been minimal because that is all that I have had.  I am certainly not out of the woods yet either but I feel like I am beginning to see some daylight at last.   When looking at the situation it is important to realise that I had only just come out of hospital after having blood transfusions for anaemia, so my system has really been running very very low.

That said, although I am still weak and undernourished I am getting there with large doses of help from the ever supportive Kitten.

There is a huge difference between knowing that you having got more material problems and the feeling of just being under the cosh but the latter has an immediate impact which cannot be immediately thrown off.

Here's looking forwards to brighter days; and may they be soon!   It will be good just to sit in comfort and laugh and joke with the family.

I am meant to be taking Huffty to Chelsea tomorrow with Notoplip and Sonic but that is not possible.  Notoplip has kindly offered to look after both and I am grateful.  The tickets are for an FA Cup match against Ipswich and we have got them in the "read supporters" stand, so Huffty is very excited and waiting to sing all his songs :-)

A little Easier

It is still tough today, but I am getting a little more food down.

Hopefully another couple of days and I will be back in reasonable shape.

Politically, it may not be the best thing to say but I am glad that the children are back at school.  They are as good as gold when they are here but they should be able to run around and make noise and the less of that for me at the moment the better.

I am making the most of my room to rest and keep things very sedate.

Meanwhile Kitten continues to cope.  Today's adventure was a problem with the car and she had to call out the AA.  It has been carted off to Notoplip's garage for repair, whilst the AA man ensured that Kitten and the kids got home safely after school.

Back but in Bits

As Kitten says, it may take a while to build myself back up again.

I am so weak from not having eaten properly for a number of days.

I am trying to get the calories in bit by bit, but it is tough mentally and physically.

I will get there!

Home Again

Just a brief word to say Swordfish is back home and comfortable in his own surroundings.

He is feeling somewhat weak but we hope to build up the nutrition gently.

I'm sure he will be blogging very soon.

Thanks to all love Kitten x

Displaced Stent

It seems that my problems have been caused by a displaced stent.

The errant one has been removed and it has been replaced by a new one.

Eating seems easier the next few days will tell for sure.

It is a bit of a relief!

I am still very weak and recovering.

I will be out of hospital tomorrow.

Squeezed onto Tomorrow's List

I just took a phone call at 11:20pm to say that I am being squeezed onto the end of a theatre list tomorrow at around midday.

This good news as it is obviously less time to have to wait.

I now have to be back into hospital for 8am.

More Information

I was admitted to hospital today but have been allowed out for this evening.

I will be back in tomorrow and then will stay overnight before having a procedure on Thursday.

The procedure will determine whether the blockage is caused by a bolus of food or a node of the tumour.

If the problem is caused by a bolus of food then it will be dispersed.

If the problem is caused by a node of a tumour then it may be possible to use another stent (as this is much further up the passage way - close to my throat).  However it may not be possible to do this if it interferes with the swallowing mechanism.  If the latter is the case then a food line directly into the stomact may be an option.

I am very weak from not eating hence the brevity of the message, but I hope that the information is useful.

We have a problem

Heuston we have a problem.

Admitted to hospital.

Procedure Thursday am to see what problem is.

Good to See our Visitors

There is a certain air of relief on my mother's part in seeing me.

In truth it is not long since I last saw her, when she popped up with all her siblings.  However, it is not as though she lives a mile away and with her son ill she is keen to visit as often as possible.

My sister is coping well with my dad in South Wales but, unbelievably, it is snowing again down there.  I don't think it is particularly heavy at the moment though. So, no danger yet of people being snowed in or out.

I will enjoy the rest of my mother and my uncle and aunty's visit and not worry to much about the eating difficulties.   We can worry about those when Kitten and I see the medics tomorrow afternoon.

In the meantime Kitten can enjoy the extra pair of hands that are in town and take herself off for a spot of shopping.

Mechanical Difficulties

There is an obvious development of nodes high up in my oesophagus and it is making it very difficult for me to eat anything.

The stent clears the way for food to get through the main obstruction i.e. where the oesophagus meets the stomach but there is no help for much higher up.

My previous diet was very diary based but the high obstruction is causing sickness through the creation of mucous.  I have got around this by eating a more solid diet, but now I cannot get the solids down.

It is a worrying development and one which may have been around for a while.  It may be that I am seeing the  effect now because of the new to move away from what was a much softer food diet.

Either way it is not helpful.

Fortunately I am back in hospital on Tuesday, so a good chat is needed to see how we move forward before I start to panic!

Visitors on Their Way

My mother (Cymraes), Gandalf and Bee are on their way and should be here at around 12:30pm.

They will be staying in London overnight and returning tomorrow, so there will be plenty of opportunity for us to catch up.

I do not live far from my family, in the sense that it is only a few hours drive, but it can seem like a long way when you are ill.  In the past I have thought nothing of driving to Wales for Sunday lunch, but those kind of stunts are just not feasible in the current climate (besides I can hardly stuff down a roast when I get there anyway!!).

What I am saying is that I am very much looking forward to seeing my family, though obviously disappointed that it will be sometime before we can include my father in the equation.  I know that my mother is bursting at the seams to get up here, so there should be smiles all round.

A Happy New Year

I would like to wish everyone a Healthy, Happy and Prosperous New Year.

Every year is filled with ups and downs and I have had my fair share this year.  There is, of course, much more difficulty ahead for me this year but there is also plenty of joy and fun to be had.  It is the prospect of these rays of light which fill my heart with hope and with the knowledge that I can keep moving forward in the bosom of my family and friendships.

The support that Kitten and I have received this year has been overwhelming and when you are on the receiving end of such generosity it reasserts the faith that you have in the underlying good qualities of human nature.

It is clear from the number of people who read my blog on a regular basis that this generosity extends well beyond people that I know in a physical sense and that it extends to people who only know me by my words out there in cyberspace.  I feel that this is a great comment in itself.

Yesterday was a tough day for me and I believe that it stemmed from the difficult journey that I had home from hospital on Thursday night.  After I returned from hospital in the early afternoon  yesterday I spent the rest of the afternoon in bed.

Notoplip, Sushi and children put in an appearance for a couple of hours in the early evening and I rose from my slumber to enjoy the occasion with them.  After that it was back to bed but I am very pleased that Kitten woke the children and me up to see the new year in.

We watched the fireworks on BBC and a bit of Jools Holland before retiring at 1am and I am really happy that I made the effort for Kitten's sake.  The children sat there munching on their little treats and there was the usual family silliness.  Moments like that give her a sense of family through the never ending drudge of caring for me.

I will write separately on Kitten soon because she has been immense over the last few months and deserves special praise.

For now though, I just want to reiterate my very best to everyone for the new year.  May 2011 by a great year for everyone.